Human Genetics Alert

MEDIA RELEASE

Embargo 00.01 am June 28th

Decision to allow human genetic manipulation is not supported by the public

Commenting on today's announcement by the Chief Medical Officer, Human Genetic Alert's (1) Director, Dr David King, said: "These techniques are unnecessary and unsafe and were in fact rejected by the majority of consultation responses. It is a disaster that the decision to cross the line that will eventually lead to a eugenic designer baby market should be taken on the basis of an utterly biased and inadequate consultation.”

“Such a decision of major historical significance requires you a much more extensive public debate with a much clearer outcome. During the consultation period there were exactly 3 articles in the national media on the subject. We therefore call upon the Secretary of State for Health not to legalise the techniques until a major national debate has taken place and the outcome is much clearer.”

The public rejected the use of these techniques : although the DH press release claims that the public supported the techniques, in fact clear majorities of those who responded to the online consultation, which was by far the largest section of the consultation, opposed legalisation of these techniques (2). Although they were supported in other sections of the consultation, these should have relatively smaller weight: the opinion poll takes ‘cold' reactions from people who have little knowledge of the arguments, and the focus groups can easily be manipulated by misleading presentation of evidence and arguments (see below). In previous HFEA consultations the online questionnaire has always been the centrepiece, and the HFEA has always cited it as the most important piece of evidence in its invariable decision to do what scientists are asking. However, when the results of that strand do not suit it, it quietly buries the evidence.

A biased and flawed consultation: HGA has analysed the way in which the HFEA biased the results of the consultation in a number of ways (3):

There are very few critical voices in the information on the website.

The website presents the arguments of scientists enthusiastically and fails to question claims made for the techniques. It also makes a number of simply incorrect scientific points.

Views of ethical critics are consistently poorly presented and then debunked. In every case, without exception, the structure is as follows: “critics raise the concern that . . . . However, others argue that. . . .”.

Critical arguments are misstated in a way that deprives them of all force; the crucial ethical framing of risks versus benefits is simply absent.

The techniques are unnecessary and their use is ethically unsound: both the HFEA and now the DH fail to properly acknowledge that there is already a safe and reliable technique for avoiding transmission of mitochondrial diseases: conventional egg donation. Thus, the only benefit of these techniques is that they allow the mother to be genetically related to the child. In either case the father will be genetically related and the mother will carry the baby to term. On the other hand the techniques impose significant risks to the health of the child, because they involve manipulations of embryos that go far beyond anything currently used. In addition, they cross the crucial ethical line, that has been agreed by governments around the world, that we should not genetically alter human beings. It is ethically unacceptable that these risks to the child (whose welfare is supposed to be the paramount consideration) and to the future of our society, should be undertaken so that 10 mothers per year can be indulged in their wish to be genetically related to their child.

The safety and efficacy of the techniques is unproven : in submissions to the HFEA, HGA has pointed out the risks to children from the complex and invasive manipulations of embryos (4). There is no body of scientific or clinical evidence that would validate the use of nuclear transfer. The HFEA has failed to deal adequately with these concerns, and seems willing to rapidly relax its criteria, based on evidence which is patently scientifically unsound (5). We would argue that much more research is needed on the safety concerns before such the techniques could be judged safe enough to be used clinically. To date there have been no scientific papers using normal embryos published that provide support that PNT, the Newcastle team's favoured option, even works.

For more information contact Dr David King: 020 7502 7516 or 07854 256040.

Notes for Editors

1. Human Genetics Alert is an independent watchdog group that supports abortion rights.

2 See http://www.hfea.gov.uk/docs/Mito-Annex_IV-questionnaire_report.pdf

3. See attached document, ‘How the HFEA misled the public'

4. See attached document, ‘Report on the safety of mitochondrial transfer'